Monday, February 27, 2017

Week 184: Write now

Here's a little good news as we head in to Rare Disease Day tomorrow. As many of you know, writing isn't just my hobby, it's my profession as well. Since Lemon was diagnosed with CF, I've been looking for a way to use my skills to benefit the CF community. So far, that's meant this blog. And a lot of emails to various people at the CF Foundation saying, "Hey, I'm a medical writer AND a CF mama. Let's do something." Finally, 3.5 years in, one of those emails landed in the right place, and I'm going to be developing some scientific content for the CF Foundation's website over the next few months. I'm so glad to have finally gotten this opportunity, and look forward to sharing the results with you in the coming months.

On the home front, things are pretty much business as usual, which, for us, is awesome. We are into our third week of Cayston so we are over the hump on this course and we're feeling cautiously optimistic that we may make it until spring without landing in the hospital again. I've finally made contact with the clinic in Milwaukee, so who knows, sometime before the end of the summer we may actually get seen there. The social worker that I spoke to there really impressed me with her knowledge of the disease and the steps she wanted to take to get us seen. She's presenting Lemon's case and what we want out of our consult to the doctors at their clinic's weekly team meeting, and she'll find out who might be the best person for us to see. Then, there's the little matter of paying for it, but I have a call in with patient accounts there so we'll see what they come up with.

This week, Lemon went on his first ever school field trip. He and all his little friends rode on a school bus to a local pet store, where the store manager showed them lots of animals that they could touch and hold. Unsurprisingly, Lemon was about 100x more excited about the school bus than the animals. He kind of liked feeding the fish, but the rest of it (rabbit, guinea pig, puppy, parrot, snake, chameleon, gecko, star fish) didn't do much for him. He mainly wanted to know when we could go and ride on the bus again. To each his own. I went along on the trip as a chaperone--I'm guessing the only one with a spare G-tube button in her purse, but you never know.

2 comments:

Glad to hear that you are finally able to make use of your medical writing skills; keep us posted as to what you are up to in that regard. It's funny what kids find exciting on field trips and I smirked at your comment about being the only chaperone with a spare g tube button. Oh, the things certain parents carry with them.

I'm glad you didn't give up on the cayston medication..cause it sure sounds like the other antibiotics have depleted their effectiveness...So glad to hear things are going well! Spring is just 2 weeks away so I will be praying that you all make it til then! You and Dudley have the patience of a saint!! Love to all!!